Saturday, May 4, 2013

Can you hear me now? No, I can't.

Two years ago today I was lying in a hospital bed in ICU. I don't remember much - but I do remember it being dark. And I remember being alone, and in and out of a deep slumber. I remember feeling very blessed and very safe. I remember feeling very taken care of. My nurses were amazing. I was not in pain. I was not scared. I was thirsty. And warm - slightly too warm. And I was uncomfortable. I remember that although I was relaxed, my heart was beating out of my chest.

Yes, two years ago, on Wednesday, May 4, I was resting after a 14-hour brain surgery. The technical term was translabyrinthine craniotomy. Doctors delicately removed the acoustic neuroma brain tumor I had growing on my 8th cranial nerve.

I started experiencing (and noticing) hearing loss near the end of 2009. I had experienced headaches and balance issues before then, but I ignored them and considered stress, exhaustion and clumsiness as the culprit.

Mid-2010 I decided that enough was enough. I couldn't hear my friends when we went out. And because I didn't know what was going on or how to deal with it, I would get frustrated. So I made an appointment with my family doctor.

In a matter of two months I had lots of doctors appointments (I won't rehash what I have already blogged about) and was diagnosed with the tumor. And after watching videos, reading blogs and hearing horror stories, I decided to choose my attitude. I was determined to make the entire experience positive. It was difficult at times, but for the most part I rocked it.

Tumor - I named it CiCi because it looked like a candy corn
When you have an acoustic neuroma you generally will have two doctors - an ENT specialist/surgeon and a neurosurgeon. And you get very close to them. I absolutely LOVE Dr. David White (Oklahoma Ear, Nose and Throat) and Dr. David Fell (Neurosurgery Specialists of Tulsa).

My tumor was smaller than most. Oftentimes hearing is the last thing to go in patients with this type of tumor. I was lucky (weird to say) because my hearing was affected quite early in the tumor growth process. Doctor suggested that I had been growing that little bitch for 5 years. It was just under 1 cm when I got my first MRI, and just over 1 cm before surgery.

Generally doctors will wait and watch. That method doesn't work for someone like me. I am too high strung and anxious. I wanted that sucker out. Surgery would have definitely been inevitable as it grew larger. Once an AN tumor gets large, it can press on the brain stem and kill a person. So getting it out one way or another was going to have to happen sooner or later.

I didn't want to get the non-surgical radiation treatment. And my doctors said that they usually do that with much older patients. They recommended the actual let's-cut-your-brain-open-and-do-this-shit surgery. And although I was scared to death, I opted for it.

And here is why ...

Because the tumor was so small, doctors thought they could save my facial nerve. The 8th cranial nerve (that is where my tumor resided) is a strand of nerves that contain the facial nerve, balance nerve and hearing nerve. My hearing was already obliterated. And doctors made it very clear that it would completely go away after surgery - leaving me 100% deaf on the left side. Since the hearing was already 90% gone, I didn't care. However, many patients will have severe facial nerve damage. I did not want that. Balance issues you adjust to, but not facial nerve damage. I am very vain - I have to be honest. Taking the tumor out before it gets really big will make facial nerve damage less of an issue. And that's why I say I am blessed.

Some patients who have the surgery will experience facial weakness and drooping and some even have weights put in their eyelids. I didn't want to do that.

So, on this day two years ago I spent the morning with my little boy, my mom and my best friend Emily. And then they wheeled me in to surgery. I cried so hard as they were wheeling me to the OR. I was so scared of dying. I had made arrangements for my little boy, but that didn't ease my mind. What DID ease my mind is when I was finally pushed in to the OR and saw my doctors and all the sweet nurses. I joked with them a bit, and asked them to be positive and not let me die.

Before surgery - fairly zoned out
Then I was asleep and being woken up in ICU. I saw nurses, my two doctors, my son, my mom and Emily. It was surreal. I didn't think I was dead. I wasn't in pain. And I felt happy (could have been the morphine). I remember winking my left eye and being elated. I looked at my doctor and winked again. He was thrilled to tell me that my facial nerve was 100% in tact.

Then I fell asleep. That was two years ago. I just can't believe how time has flown.

I am very grateful, still.

The next morning I woke up and drank gallons of juice and water. I was so thirsty.

The morning after
 I was home within three days. And back to work in four weeks. I could have gone back earlier. But my doctors made it mandatory to rest for four weeks.

Swollen head with sutures still in place
While they had my head cut open they inserted the BAHA implant. That is this cool implant that is in my mastoid bone. I have a little snap that sticks out of my skull and a device I can wear on it. It doesn't technically make me hear. But it does allow me to hear. Confusing, huh? It's science shit, I can't explain it.

The day I got my stitches out
 However, I have never really worn it. It hurts. And sometimes my head still hurts. And my brain surgery scar hurts sometimes. And my head swells on the left side. But I don't have a tumor anymore. But what I do have is a small little cyst around my BAHA abutment. It's definitely not cancerous, just annoying. Doctor is going to change the size of the abutment and fix me up in a few weeks. Then maybe I can start wearing the BAHA.

The most difficult part of the entire ordeal has been my loss of hearing. It really sucks. And although I have adjusted to it by sitting strategically when I go out, I am still not used to it. It's so damned frustrating. I have stopped asking for people to repeat themselves. Instead I just ignore them if I don't hear what they say. And I am terribly tired of telling my friends and coworkers that I am deaf on the left side. I know they must know by now, but because they don't have to live with the deafness, they forget. And it sucks.

I have used the single sided deafness to my advantage at work some. It's nice to be able to ignore someone and then blame it on my hearing loss.

Overall, I am great. Blessed. Lucky. Thankful. Grateful. And full of life. My friends were so amazing during my plight and I will never be able to thank them enough. And my doctors, man, they were awesome, too!

So if you are reading this after finding my blog by researching acoustic neuromas, and if you have one and don't know what to do, here is my advice.

1. Choose your attitude. Decide to be positive and never negative, no matter how bad the ringing in your ears gets. No matter how bad your head hurts. No matter how much it sucks not hearing people. No matter what. Stay positive. It's easier said than done, but it's not impossible.
2. Opt for surgery sooner than later.
3. Listen to your doctor - they really know what's best.
4. Make all your plans before surgery - living will, and all that sad shit that you never want to think about. If you are a control freak like me, you will feel better having done all the grueling stuff before surgery.
5. Stay positive. Did I already mention that?!
6. Get as healthy as possible before your surgery. Eat well. Sleep well. Work out a bit. I was definitely not the epitome of health (and I am still not), but eating, sleeping and moving well before surgery definitely made a difference.
7. Eat well, sleep well and move a lot after surgery. Walk as much as possible to get used to that balance crap.
8. Don't mope. Especially after surgery. First of all, it's a bummer and super unbecoming and your friends will hate it. Plus, it will just depress you if you mope.
9. Drink fresh fruit smoothies for at least a month after surgery. You will have a weird appetite after surgery and everything will taste like shitty cardboard. But smoothies will taste delicious.
10. Love those around you and be grateful.

Ancora Imparo, for real!